“We have already heard that the treatment doesn't do anything, so why should we take it?”: A mixed method perspective on Chagas disease knowledge, attitudes, prevention, and treatment behaviour in the Bolivian Chaco

Abstract

Background Chagas disease (CD) is highly endemic in the Bolivian Chaco. The municipality of Monteagudo has been targeted by national interventions as well as by Médecins Sans Frontières to reduce infection rates, and to decentralize early diagnosis and treatment. This study seeks to determine the knowledge and attitudes of a population with increased awareness and to identify remaining factors and barriers for sustained vector control, health care seeking behaviour, and access, in order to improve future interventions. Methodology/Principal findings A cross-sectional survey was conducted among approximately 10% (n = 669) of the municipality of Monteagudo’s households that were randomly selected. Additionally, a total of 14 in-depth interviews and 2 focus group discussions were conducted with patients and key informants. Several attitudes and practices were identified that could undermine effective control against (re-)infection. Knowledge of clinical symptoms and secondary prevention was limited, and revealed specific misconceptions. Although 76% of the participants had been tested for CD, only 18% of those who tested positive concluded treatment with benznidazole (BNZ). Sustained positive serologies after treatment led to perceived ineffectiveness of BNZ. Moreover, access barriers such as direct as well as indirect costs, BNZ stock-outs and a fear of adverse reactions triggered by other community members made patients opt for alternative treatments against CD such as veterinary ivermectin, used by 28% of infected participants in our study. The lack of accessible care for chronic complications as well as socioeconomic consequences, such as the exclusion from both job opportunities and bank loans contributed to the ongoing burden of CD. Conclusions/Significance Large scale interventions should be accompanied by operational research in order to identify misconceptions and unintended consequences early on, to generate accessible data for future interventions, and for rigorous evaluation. An integrated, community-based approach tackling social determinants and including both traditional and animal health sectors might help to overcome current barriers and advocate for patients’ rights.

Assessing antibody decline after chemotherapy of early chronic Chagas disease patients

“…Nevertheless, except in treatment of initial acute cases or in the chronic phase during early childhood, the decline of conventional antibody (IgG) titres may take many years [ 16 , 17 ], and patients therefore remain without confirmation of treatment outcome. Not having a definitive answer soon after chemotherapy is a fundamental impediment that can complicate patient management, and patients may be unwilling to start prolonged drug treatment if there is a risk of adverse side effects, with uncertain improvement of clinical prognosis, such as prevention of cardiomyopathy [ 18 , 19 ]. Furthermore, with increased national and international migration, long-term patient follow-up is proving difficult and impractical.…”

Community-based screening of Chagas disease among Latin American migrants in a non-endemic country: an observational study

“…They may not have known about the chronic course of the disease, potentially receiving limited information at the time of the previous test. According to Parsi et al [ 35 ] even after health campaigns in endemic areas, persistent knowledge gaps and misconceptions of serologic test results remain and contribute to creating structural barriers, leading to the normalization and acceptance of Chagas disease and its social consequences. Our campaign suggests that ease of access (testing on weekends, all activities free and freely offered to all) may help to convince people to come to the screening.…”

“…Less than 30% of participants were aware of the asymptomatic nature of this parasitic infection, one of the main causes of underdiagnosis[ 16 , 35 , 40 , 55 ]. Lack of knowledge on Chagas disease in both at-risk populations and healthcare professionals, fear, stigma, and structural barriers are likewise contributing to Chagas disease underdiagnosis [ 13 , 56 ].…”

Understanding the widespread use of veterinary ivermectin for Chagas disease, underlying factors and implications for the COVID-19 pandemic: a convergent mixed-methods study

“…No household refused participation. Moreover, 14 IDI and 2 FGD were conducted ( table 2 depicts the sociodemographic characteristics of the survey population; the overall results have been reported elsewhere 25 ).…”

“…In a representative mixed-methods study on knowledge, perceptions and treatment practices carried out in Monteagudo (Bolivia) in the pre-COVID-19 era in 2018, widespread intake of vet-IVM against CD emerged to an extent that had never been described before. 25 In light of the current ivermectin hype and use of vet-IVM for COVID-19 in Bolivia and its neighbouring countries, we conducted an in-depth analysis on all vet-IVM-related narratives and survey data. The aim of this analysis was to better understand this phenomenon, its extent and the potential underlying factors.…”